Not at the Amusement Park

Caregiving is like riding a roller coaster. The ups, the downs, the quick turns; you ascend slowly to the top of the hill, and then for added excitement, go down the hill with you arms up in the air. Feeling the wind in your face and being tossed to and fro, ah the exhilaration of it all. Maybe that’s when it happens, when you’re not holding onto the bar. All I know is it appears nothing is ever the same for more than a couple of days.

After a week in the hospital I brought my husband home late Tuesday. In my last post I talked about all the wonderful things the new doctors and hospital were doing for him. Now it seems not so much, at least that’s how it feels today.

His legs were so swollen with fluid that it actually turned into large water blisters that proceeded to become nasty, open wounds. I just changed his footies for him and his feet are severely discolored. He is diabetic. I try not to let him see how scared I am about the unhealthy sight of his feet. He gets home health wound care every three days and they wrap him from ankle to knee in gauze.

Big changes were made to his meds; many discontinued; some new ones. This includes two oral antibiotics which are giving him severe muscle aches and gastro intestinal issues. Always a good time when he’s in a wheelchair and cannot even stand to transfer to commode but rather has to slide onto it.

We start up, once again, with another plethora of doctor follow up visits. As all these medical issues keep surfacing, he continues to lose more and more strength. We’re rapidly approaching the one-year mark since his spinal cord surgery and rehab. He now only occasionally mentions that he intends to walk again. More and more, we are accommodating the house to suit his wheelchair needs, he no longer resists. He (we) have briefly discussed the possibility that this could be our new life. That’s for another day. I should have held onto the bar!

6 thoughts on “Not at the Amusement Park”

Dear sweet Pegi,
First of all? So GOOD to see your blog again! Love reading about you and your hubby…. Even (I know this is bad?) the had times. Maybe especially those since we can listen. We can do that you know. Listen. That is what is so good about caregiving.com. You can write about the bad times and everyone will listen.
At least you are talking about what might be. But have courage. You never know what God has intended for us right? The turn around the roller coaster might once again be for the right instead of the left. Of that? I am positive! {{HUGS}}

Pegi, you may not have held onto the bar, but you are still securely strapped into your chair through all the shakes and falls. Neither of you has fallen out of the ride.

You and your hubby are adjusting to things as they are, in the present moment. That’s really the bottom line. This is one roller coaster in which we can’t see where the tracks go ahead. We just have to keep up with the momentum. You are doing that, day in and day out, as scary as it is, as disappointing as it can be. And as @gail said, we are here. (((Hugs)))

The roller coaster is such a great image for what we go through! When the track rises, we get our hopes up but it seems there’s always a plummet just ahead — and often the plummet takes us (takes our loved one) lower than we thought the track could go. I’m so sorry. We both know that cheerful platitudes don’t comfort very deeply in the midst of the ride. What you’re experiencing is hard and real. I appreciate how well you’re able to put the ride into words. Thank you for your writing here. I’ll look forward to hearing more from you.

Thank you all for your kind words. @Denise, once again I have to thank you for building a site like this. I don’t know if you can even imagine how difficult all of this is. I’m sure some of you do. There are times that the people in my life not only can’t comprehend, but seem to discourage. I get excited about a good day, or a good hour and relay the information only to hear back “that’s what you said last week about such and such”. If there were no hope, if there was not this marvelous group of fellow Caregivers I’ve been blessed to find here, there’s a good chance my head might just explode…wouldn’t be pretty. Oh yes, it does my heart good to know you’re riding the coaster with me. I look forward to any comments, bits of advice et. al. The feedback fills my sagging spirits.

Your entry touched my heart. The magnitude of your workload has me very concerned about you. The fact that the medical care/system is easing off their support and care is a very sad reality. I’d call our current system at being great whenever it comes to DOING tests or operations but when it comes down to actual care, we’re on our own. For what it’s worth, you’ve earned my respect – because you deserve it.

My gut instinct is you love having a home that’s perfect in EVERY way. In other words people are always complimenting about your lovely home. Now you’re in a situation where your husbands physical limitation and your home don’t quite meld together. Don’t panic – they can. One of my family members told me “Make your home work for you.” Best advice I was ever given yet I’ve found implementation easier said than done. Believe it or not, we can have our cake and eat it too.

Since I’ve been in a wheelchair for 14 years I’ve learned that wide open expanses doesn’t always equal things are easier to use. Here’s a couple ideas that have worked for me and might help you:

1: Handholds = towel racks. We don’t need to turn our bathrooms into a nursing home motief. Anyplace you need a handrail to grab consider a towel rack switch out. Just make sure you’ve had them installed by someone who secured them to a wall stud that can bare FULL body weight. It’s not only important for your husband but also for you. You also need that extra bit of leverage whenever you’re transferring him around in the bath.
2: Cozy areas sometimes works better than vast expanses. When you’re making comfortable areas for your husband, always look at how EVERYTHING is easier for him to grab, get, or do. An idea that works great for me are side-tables. Always looks for tables with easy to access storage built in and that are solid as a rock. That way your husband can bare his weight on the table whenever he’s transferring from a wheelchair to a recliner for example.

One of our greatest hurdles is in how we keep our spouse connected to living when they themselves are withdrawing into their ever smaller world within. Your roller coaster analogy couldn’t have said it better. We have some hours (or even better yet a day or two) when we’re sure we’re back on track then WHAM, we loose whatever precious ground we think we’ve gained.

We spend a lifetime planning for our tomorrow together yet here we are in this unknown land of “What do I do next?” I wish I had those answers. It looks like you’re handling this a whole lot better than most. Now that’s what I’d call an amazing inner strength.

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